TAIPEI (Taiwan News) — The number of countries that have legalized euthanasia has grown in recent years, and as Taiwan legislators debate legal changes to address the issue, a group of Taiwan doctors and volunteers have been quietly helping the terminally ill access assisted suicide.
The group is named Taiwan End-of-Life Dignity and Consultation Services Association (TEDSA). It was founded by Taiwanese emergency care doctor John (last name withheld) and a classmate while both were still at university. John said he became motivated to start the group after meeting terminally ill patients who had given up on treatment.
“Because Taiwan’s laws and regulations around this issue were not well developed, in the end, these patients simply waited for death,” he told Taiwan News.
Now John, other doctors, and a group of volunteers at TEDSA help those who seek their assistance to travel to Switzerland for assisted suicide. John said that since the group began to offer consultation services, it has helped 12 terminally ill and dying people end their lives, and currently has just over 20 people who it is helping through the application process.
The stories TEDSA shares of those they have helped access assisted suicide all involve similar experiences. They describe patients who have long battled chronic illness or disease, but have reached the point where their physical condition has deteriorated so badly that they have no quality of life, and want to die.
Consultation and advice
TEDSA works with the Swiss organization Dignitas, and helps individuals apply for assisted suicide. Dignitas provides a service to those with terminal illness, unendurable incapacitating disabilities, or unbearable and uncontrollable pain, greatly expanding the personal autonomy of those who wish to end their own lives due to health issues.
Causing the death of someone who wishes to die (known as “active euthanasia”) is technically illegal in Switzerland, but providing the means to commit suicide to individuals who wish to die has been legal for over 80 years. A Swiss doctor may provide lethal medicine to a patient, for example, so long as that person administers it themselves.
Patients working with TEDSA do so with their immediate families (from whom TEDSA seeks a unanimous decision) to undergo a review process. If TEDSA agrees to help them, they will help the applicant to join Dignitas, after which they apply for assisted suicide.
The applicant is required to submit their medical records to Dignitas to confirm eligibility, and undergo two interviews with Dignitas doctors in Switzerland. If they pass those stages, their application will be approved, and a date will be set on which the applicant will be provided with lethal drugs to end their own life.
(Unsplash, Obed Tewes photo)
John said TEDSA mostly relies on volunteers to run the consultation service, and has a core team of six. Otherwise, 15 volunteers and two doctors work with the group at different times.
“Every person has different medical issues, their family situation is different, and the support needed is different,” he said. “We rely on our volunteers, and each patient has a one-on-one contact person to assist them to understand and give them the information they need.”
In TEDSA’s first one or two years of operation, it could mostly afford to cover its own operational costs. However, because applications for assisted suicide consultation are growing, the group now takes some payment to cover consultation fees for outside doctors and medical professionals.
“Some of the cases are getting more complex, and need a bit longer to discuss, so we will take some payment for doctors,” John said.
“If there is a patient with a particularly complex medical condition, we will ask other doctors to join us for a discussion, and then the volunteers take the application forward.” TEDSA does not make any profit, he said, adding the fees charged are only to cover expenses incurred when assessing applications.
Right to autonomy
Despite euthanasia and assisted suicide being illegal in Taiwan, the country is relatively progressive in Asia, having passed the Patient Right to Autonomy Act in 2015, the first of its kind in Asia.
Among other things, the act allowed for the creation of advanced care plans that outline a patient’s desire to accept or refuse life-sustaining medical care in the event they become terminally ill, are in a vegetative state, and some other conditions. Over 46,000 people had created the documents by February this year, and it has been suggested that if this law is implemented properly, more patients will be able to achieve a “good death,” free from unnecessary suffering.
However, John said he hopes to bring the methods used in Switzerland back to Taiwan eventually, as the options provided there allow the sick greater autonomy in their death.
As the name suggests, advanced care plans must be created and agreed to, and only allow for patients to reject life-sustaining medicines or life support. In Taiwan, doctors cannot prescribe lethal medicines to terminally ill and dying patients who wish to end their own lives.
The act also says that when it is time to enact a patient’s pre-stated wishes to refuse medical care, it must be agreed upon by two doctors in the relevant specialties, and confirmed through at least two consultations convened by an end-of-life care team.
Mood for change?
When previously asked about TEDSA’s work, Dignitas representative Silvian Luley said that he supports the decision of groups who provide help to suffering people. However, he said the most important task for advocacy groups is to encourage legislative change in their home countries.
If this is achieved, people can be taken care of in their home without needing to travel to Switzerland, Luley said.
In May, well-known sculptor Ju Ming (??) committed suicide after battling chronic health problems for many years, leading to renewed calls for end-of-life care reform beyond the patient autonomy act. However, Taiwan’s health minister Hsueh Jui-yuan (???) said at the time that it would be inappropriate for the government to actively promote discussions of euthanasia, and recommended they begin at the grassroots.
Despite Hsueh’s general opposition, Taiwan’s legislature discussed the proposed End of Life with Dignity Act for the first time in March, which would essentially allow for physician assisted suicide in a similar fashion to Switzerland. The act received conditional support from some legislators, though it was opposed by the National Physician Association on ethical grounds, a concern echoed by Hsieh.
In addition to some physician’s ethical concerns, John said the lack of political will to further reform Taiwan’s end of life laws is often intertwined with religious opposition, which makes it difficult to promote TEDSA’s work.
“The opposition mostly comes from religion and traditional values,” he said. “Taiwan is mainly Buddhist, which includes the belief that one should not end life, including one’s own.”
“The belief is that if a patient is suffering, it is the result of a karmic process of cause and effect, and that human means should not be used to interrupt it,” John said.
He also said that religion combines with Taiwan’s electoral politics to create further barriers to acceptance of euthanasia and assisted suicide.
“In Taiwan there are a lot of temples, and temples will work with government figures during elections,” John said. “If politicians want to get votes, they will probably be more likely to be conservative and follow the temple’s wishes.”
Ju Ming, the sculptor who ended his own life at 85-years-old following years of chronic health issues. (CNA photo)
Top down, bottom up
In terms of the grassroots support advocated for by the health minister, a petition posted on Taiwan’s government-run public policy platform recently surpassed the 5,000-signature threshold, thereby requiring a government response. When asked about this, TEDSA said what the petition is asking is similar to the proposed End of Life with Dignity Act, and that it is likely the government will respond to it by recommending signees wait for debates around that act to play out.
However, TEDSA also indicated it is cautious about non-expert opinion leading the public discourse on the issue. “How to legislate, establish relative supporting measures, and review mechanisms is extremely important,” a spokesperson said.
“These aspects require expert discussions of associated medical, ethical, legal, and philosophical issues. We surmise that both in practice and in theory these issues are not suitable for a referendum.”
Despite this, TEDSA continues its work, and remains optimistic that euthanasia or assisted suicide will eventually become legal in Taiwan. The group said that despite some opposition, more and more young people are coming to accept the idea.
“The attitude we take is to keep a low profile, and keep posting news about our activities on the internet,” John said.
“We hope that those who need it will come to us.”
The lotus flower, which is often associated with notions of karma. (Wikimedia Commons, Nevit Dilman photo)
